“I’m guessing you’ve never been labelled with a ‘mental illness.’ I think it’s about time we lay that particular genre of all-purpose retorts to rest — one instance at a time, one person at a time, day by day, from now on. I’m ready to start doing my part. How ’bout you?”

An unremarkable comment on my part. And unremarkable lameness ensued:

Person1: “I have been labeled with a mental illness, straight out of the DSM-IV and I have no problem with the characterization.”

Feh…

Person2: “So have I. Note that neither [Person1] nor I put the words mental illness in quotes–that’s because we know from hard experience that it’s bloody well real.”

Presumption building…

Person3: “Represent! I as well, (multiple ones in fact). Mr./Ms. dkmnow is suffering from Butthurt by proxy, very similar to Münchausen’s by proxy except that Münchausen’s involves actually seeing a health professional.”

Done. Full Blown Misrepresentation. In Three Easy Steps.

*sigh*

Person3’s all-too-familiar sneer was posted while I was busy writing my reply to Person2, as follows:

Decades ago, homosexuality was officially recognized as a mental illness. If it was a real illness then, why isn’t it an illness today? Likewise, Gender Identity Disorder has finally been removed from the upcoming DSM-5. Now, this will create significant funding problems for a large number of very vulnerable people, but at the same time, it will help to reduce the stigma that society has long heaped upon transgendered persons. But the question remains: Is GID a Real Mental Illness, or isn’t it? And this is hardly an uncommon question to ask about DSM-defined conditions. Virtually anyone who has studied the process of how DSM diagnoses are derived can tell you that such conundrums abound in connection with virtually every DSM label.

But this is peripheral to my point. I’ll put it another way. Is it ethical to condone and participate in a popular cultural behavior that entails using people who have been labeled with “mental illnesses” — be they real, imagined, or falsely assigned — by equating them with any or all of the biggest a$$holes in our vaunted “normal” society? Is this not an ill-considered and casually dismissive way of exacerbating the stigma already heaped upon those who suffer from mental illnesses?

Not clear enough? Okay. How about when several million of society’s least criminal, most law-abiding, and most uniquely vulnerable citizens suddenly find they are being categorically equated with mass-murderers by tens of millions of others, and, in addition to their pre-existing disadvantages, are now being routinely targeted with a terrifying escalation of slander/libel, discrimination, harassment, assault, and worse?

Or is the casual promotion of stigma and the sustaining of popular biases against any & all labelled “mentally ill” not really a Real™ problem? Perhaps you’ve gotten all comfy with the notion that it’s not your problem. I would hope that the gratuitously predatory media-driven fallout from the Sandy Hook incident might have shown you otherwise by now. “First they came for the communists…”

While you’re busy not standing out, one group is standing up. But after they’ve rounded up all the autistics, who will be left to stand up for you?

Do I have to show you my scars now?

. . .

Again, I yawn. What follows will not likely be of any consequence. Few will see any of it. I may check back in a day or so, but I doubt I’ll bother with any further replies. Still, it was pretty disappointing. Emblematic of our culture, and even of most who identify as mentally ill, apparently. We do as we’re told, math is hard, and Barbie™ can go on being proud.

[I deliver the following without a trace of irony. There is no humor here. Only pain … and one more crumb of hope.]

Dear Autism Speaks,

In the wake of the Sandy Hook tragedy, my sorrow for you is immeasurable. You are now seeing your very own children demonized in the popular media, and thus, in the minds of an entire generation of Americans. You are beginning to see how this will make your children’s lives even harder. You are seeing how the stigma and social burdens already heaped upon them are now doubled and redoubled with each new slur. And you are seeing how this newly amplified social prejudice and discrimination against your children will not go away. It’s heartbreaking.

Doubly so for us.

We, the adult autistic community, have been trying to warn you about this for years. We have endlessly demanded, pleaded, even begged you to drop your bombastic rhetoric about how “monstrous” autism is, how it “destroys families,” how it’s “a burden on society.” When the public is fed this sort supercharged emotional imagery, they do not connect it with some abstraction called “autism.” They connect it with real people. They connect it with US. All of us, including your children. When the public looks at us, they see our faces and feel the “monstrous” imagery you have instilled in them. In this way, WE become the Monster. And when they see us in this way, they treat us badly. They treat your children badly, as you are now seeing, and as you will continue to see for years and decades to come.

This is how dehumanization works. This is the process called “scapegoating.” This is how paranoid societies wipe out whole populations of innocents without feeling a trace of guilt. This, in all its glory, is the the face of injustice.

And this is what we tried to warn you about. This is what we asked you to help us stop. But you didn’t see any point in listening to the people you claimed to speak for.

For today, at least, it is not you who are doing the demonizing. Indeed, several of your officers have been quite vocal in trying to fight back the “mass-murderers” hysteria by which we have now been permanently branded. But your voices are now swept aside by the media’s torrent, just as our voices have always been swept aside by yours. And it is now too late to stop the tsunami of prejudice that today threatens to drown your very own children. Oh, Autism Speaks, if only you had listened.

But it’s not too late to start.

We are still here. We will always be here. Waiting. It’s time for you to take up the burden in a new way, by learning from us how to be a little bit ‘autistic’ yourselves: by saying what you mean, and by meaning what you say.

Just a quick update. My surge of motivation last year wasn’t enough to overcome the functional challenges I face in blogging, and frankly, that didn’t come as much of a surprise. But that’s fine. For now, I’ve mostly rolled things back to their pre-2011 state. With few exceptions, I’ve dumped the prematurely added categories and posts that just didn’t belong. Feels better this way.

I will be doing my best over the next week or so to come up with some kind of response to the Scarborough Atrocity. The NYU/CSC “Ransom Notes” campaign and the Autism Speaks “I Am Autism” video were awful, but in terms of widespread long-term harm to the autistic community, this really does appear to be much, MUCH worse. Just flinging tweets at the world won’t do, not this time. So expect something on the topic to appear here before long.

Otherwise, visitors should still expect my updates to be infrequent & sporadic, as they have always been.

Everyone wants to appear helpful. Trouble is, rarely are any of us willing to do the extremely hard work of figuring out just exactly what help, if any, is actually needed. And when we fail to prevent our motives from being ruled by the social compulsion to appear helpful [and/or, the drive to promote our own careers … hint, hint], our rationality is invariably compromised by conflicting interests, and we are almost absolutely guaranteed to screw the pooch. In such cases, unless we just happen to get lucky enough to guess right — which is a bit like playing the lottery with someone else’s money — then we are very likely to end up harming the person we’re so hell-bent on “helping,” and perhaps (OMG!) ourselves as well.

Or, to repeat what is rapidly becoming an old saw in my limited repertoire: “Ninety-nine per cent of the art of helping lies in knowing what NOT to do.”

But Ego is a Jealous God [as are fame and wealth], and guarding against the corrupting influence of social compulsion and ego-defense is perhaps the hardest work of all. It requires a great deal of time, self-awareness, careful critical thinking and skepticism, and rarest of all, an extraordinary commitment to self-honesty.

But, failing all that, here’s one rule-of-thumb whereby we can help ourselves to, at the very least, do no harm:

If we feel compelled to keep telling people over and over that we’re “only trying to help” … then WE’RE NOT.

This is not some cynical admonition to never try to be helpful — far from it. Rather, we should take these hard realities as a recurring opportunity to carefully examine our own commitment to actually being helpful.

The letter below is the latest step in a national and international protest against the U.S. organization known as Autism Speaks. Countless attempts have been made to impress upon the organization that its public rhetoric, policies and practices are profoundly harmful to ALL Autistic citizens, and that its leadership MUST accept guidance from Autistic stakeholders and the broader disability rights communities if they wish to retain their status as a prominent charitable organization.Read the rest of this entry »

Not a bad article – especially in contrast to the kind of “information” that currently dominates popular opinion on the topic of autism.

Unfortunately, it does not go nearly far enough into the question of harm, because it proceeds solely from the narrow “deficit model” of autism. Lacking what is sometimes referred to in academia as “the sociological perspective,” such discussions cannot approach the issues that have, by far, the most devastating impact on quality of life, not only for children, but for all Autistics.Read the rest of this entry »

“The video was made by girls at a Spanaway, Washington school who apparently had a falling out with a classmate, Piper. The clip carries illustrations of Piper being shot, made to commit suicide, thrown off a cliff and poisoned…”

Of course, we note — with some satisfaction, no doubt — that these girls were “disciplined.” That’s the modern-day euphemism for extrinsic punishment. We no longer remember what that revered word “discipline” once expressed. We just use it to sanctify that very social mechanism which makes such offenses so common first place: society’s unquestioning devotion to, and all-consuming obsession with, extrinsic behavioral conditioning.

[Note to Autism Hub members: that last devotion/obsession is, in my opinion, the very root of what ultimately makes ABA and its offshoots unethical.]